Sunday, December 12, 2010

Whats news here? Not much. The Omnicef seems to be helping with Drew's sound (I say sound because its not really a cold. No one knows what it is really other than some extra mucus presumably caused by some bacteria). Its either than the Omnicef is really finally doing the trick, or its just the 5th straight week on antibiotics finally kicking it. The reason we stuck with antibiotics is partly because the doctors are starting to think that because of the abnormalities in Drew's airways, when he does get some bacteria causing trouble it just takes a really long time to get it out. But persistence is key. I'd rather be on antibiotics for a couple of months and get rid of it than deal with it and end up with some lung damage. We switched antibiotics a couple of times too so that he doesn't start building up resistant.

I think that some people think that because he sounds the way he does that he's sick. He is in a way I suppose, but not a way that could get anyone but another CFer sick. The bacteria thats in his lungs wouldn't make it to your lungs or my lungs. Regardless of whether or not hes on antibiotics, you can't "catch" what hes got. For you or I, if we get a cold there might be some coughing, maybe a runny or stuffy nose and within a couple of days we're over it. For Drew, theres coughing, theres increased mucus. You could catch a cold from him just like you could catch a cold from Joe Schmoe, but the lung infections aren't passed on. We cough, you and I, and it rattles the bacteria filled mucus and we cough it up and clear it out of our lungs. Drew coughs and rattles the mucus, but because its so thick and sticky the bacteria sets up shop. When he coughs it up, some of that bacteria stays put. Thats the problem. You can't catch what he has.

Its still weird to me thinking of him as a "special needs" kid. We work with Early Intervention in Cincinnati. Its a free service provided by our county that pairs us with a developmental specialist to track him until age three when hes turned over to the school district. He doesn't have any "developmental disabilities", but I'll take a free service when I'm offered one. They basically just come over once a month and watch us play, ask if hes hitting different milestones, and ask what they can do to help. And occasionally they bring us a book. They're nice enough people so I don't mind them, and if something does come up at some point (for example speech delay or the need for some sort of physical therapy or occupational therapy, unrelated to the CF whatsoever) they will provide that service to us free of charge. That beats dragging the whole family to the hospital to meet with whoever we need to. CF qualifies as a disability eligible for the Early Intervention services, so we took them. But when they talk about him as a "special needs" kid it still seems weird.

I do spend some time talking about Drew and CF and our experience with it on the blog, but I think I also try to just focus on our life. So there is a special needs kid in our family. So what. I want to show people that our life is just as good theirs is. We don't dwell on the CF. We deal with it. It doesn't consume our lives, though its a big part of it. There are plenty of happy times. There are plenty of scary times. Hopefully we will have more happy than scary going forward.

This is another one of those blog posts that I started in my head days ago and can't remember what I was thinking or wanting to write. It seems anymore that until we get the kids to bed, whether it be at naptime or bedtime, and the house cleaned up and the dishwasher loaded and the clothes folded, and the online shopping done, that I'm tired and just want to drink my coffee and sit around doing nothing. I'm hoping to be better about that all in the new year. I'm hoping to make an effort to write my thoughts out on here. I'm hoping to change some of my behaviors, like putting down my cell phone and focusing on the activity at hand, be it cleaning the kitchen or making snowmen out of playdoh. I'm hoping to be a better listener, to find time for what's important, and be a better person. This year alone has changed me. It has made me a better person. I know that this is my calling. Drew was made for me and I'm gonna fight the good fight. But I really want to be a better person. I want to educate others. I want to raise funds for a cure. I want to be a part of something bigger. Oh yeah, and I wouldn't mind losing a few pounds. Going to be a busy 2011!

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